1. Recognizing. Patient- and Family-Centered Care. William Schwab, M. D
Recognizing Patient- and Family-Centered Care William Schwab, M.D. University of Wisconsin Department of Family Medicine
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2. What is a Family? (cont’d)
Families are big, small, extended, nuclear, multi-generational, with one parent, two parents, and grandparents. We live under one roof or many. A family can be as temporary as a few weeks as permanent as forever. We become part of a family by birth, adoption, marriage, or from a desire of mutual support. A family is a culture unto itself., with different values and a unique way of realizing its dream; together, our families become the source of our rich cultural heritage and spiritual diversity. Our families create neighborhoods, communities, states and nations.
-Task Force on Young Children and Families, New Mexico Legislature
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3. Patient- and Family-Centered Principles
People are treated with respect and dignity.
Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming and useful.
Individuals and families build on their strengths through participation in experiences that enhance control and independence.
Collaboration among patients, families, and providers occurs in policy and program development and professional education, as well as in the delivery of care.
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4. Public Perceptions of Health Care
The system is a nightmare to navigate
Caregivers don’t provide enough information
Patients are not involved in decisions about their health care
Hospital caregivers are not emotionally supportive American Hospital Association and the Picker Institute, 1996
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5. Major Unnecessary Costs in Health Care
Inconsistent Quality
Errors, especially in the transitions and transfers
Infections
Poor Communication
Unsatisfied customers
Poor design of facilities
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6. Institute of Medicine — Crossing the Quality Chasm: A New Health System for the 21st Century
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7. Recognizing the Driving Forces
System-Centered Driving Force:
The priorities of the system and those who work within it drive the delivery of health care.
Patient- Focused Driving Force:
The patient is the focus or unit of care. Interventions are done to and for him/her, instead of with the patient. The patient is not viewed within the context of family or community.
Family-Focused Driving Force:
While the family is the focus or the unit of care, interventions are done to and for them, instead of with them.
Patient- and Family-Centered Driving Force:
The priorities and choices of patients and their families drive the delivery of health care.
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8. Recognizing the Driving Forces (cont’)
Discuss each statement and identify the driving force:
SC, PF, FF, or FC.
After reviewing patient satisfaction surveys, the clinic changes its office hours to include some evening sessions.
An obstetrical patient’s husband is invited to clinic appointments and to observe the ultrasound.
A patient who has been newly added as a member of the clinic’s Quality Improvement committee is sent a letter telling her where and when the next meeting will be held.
Nursing staff plan the diabetes education class.
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9. Recognizing the Driving Forces (cont’d)
Discuss each statement and identify the driving force:
SC, PF, FF, or FC
The clinic administrator invites patients and families to comment on the final plans for the facility’s upcoming renovation.
Patients and family members teach an orientation class for all new staff and physicians.
The job description for nurses states that they are to develop chronic disease management plans for patients and their families.
Clinic staff link a patient who has depression with a peer mentor.
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10. Recognizing the Driving Forces (cont’d)
Discuss each statement and identify the driving force:
SC, PF, FF, or FC
A nurse and a social worker co-lead monthly support group meetings for families caring for patients with dementia.
Computers are available in the waiting room for patients to record their goals/priorities for each office visit.
A multidisciplinary committee develops new educational materials about asthma for patients and families.
Three patient and family advisors are invited to join a QI team that is beginning an initiative to improve transitions of care between the emergency department, inpatient hospital units, and community primary care practices.
Adapted from: Edelman, L., Ed. (1991). Getting on Board: Training Activities to Promote the Practice
of Family-Centered Care. Baltimore: Project Copernicus.
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11. Patient- and family-centered care provides the framework and strategies for improving quality, safety, and the experience of care.
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12. Why Patient- AND Family-Centered Care
Social isolation is a risk factor.
The majority of patients have some connection to family or natural support.
Individuals, who are most dependent on hospital care and the broader health care system, are most dependent on families…
The very young;
The very old; and
Those with chronic conditions.
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13. American Hospital Association
AHA has developed leadership strategies to make the six aims of the Institute of Medicine’s Report a reality in hospitals.
AHA News features a regular column on patient- and family-centered care.
AHA has sent a Patient- and Family-Centered Toolkit to the CEO of every U.S. Hospital.

14. AHA McKesson Quest for Quality Prize
. . .integrating patient- and family-centered care with quality and safety agendas.

15. Patient Safety Joint Commission on Accreditation of Healthcare Organizations (JCAHO)
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A trusted friend or family member should accompany you for clinic and hospital visits.

16. HIPAA Health Information Portability and Accountability Act
Patient Protection
Notice of Privacy Protections
Controlled access to records
Ability to edit
Exceptions to improve care
Treatment
Payments
Operations

17. Accreditation Council for Graduate Medical Education
Patient Care
Medical Knowledge
Practice-Based Learning and Improvement
Interpersonal and Communication Skills
Professionalism
Systems-Based Practice
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18. American Academy of Pediatrics
2001: “Family-Centered Home Care,” a chapter developed by the Institute for Family-Centered Care and co-authored by a parent of children with special needs.
“A Self Assessment Inventory: Family-Centered Pediatric Home Care” included in the publication.
2003: Policy Statement in Pediatrics
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19. Society of Pediatric Nurses
Issues a statement that family-centered care is the standard of care for pediatric nursing.
2003
Publishes a comprehensive review of the literature with practice recommendations.
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20. National Association of Emergency Medical Technicians
Boudreaux, E. D., Francis, J. L., & Loyacono, T. (2002).  Family presence during invasive procedures and resuscitations in the emergency department: A critical review and suggestions for future research. Annals of Emergency Medicine, 40(2),
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21. Patient- and Family-Centered Care Linked with Cultural Competency
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22. Medical Home (AAP)
An approach to providing health care services in a high-quality, comprehensive, and cost-effective manner
Provision of care through a primary care physician through partnership with other allied health care professionals and the family
Acts in CYSHCN’s best interest to achieve maximum family potential
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23. Medical Home (AAFP)
The American Academy of Family Physicians believes that everyone should have a personal medical home that serves as the focal point through which all individuals-regardless of age, sex, race, or socioeconomic status-receive acute, chronic, and preventive medical services. Through an on-going relationship with a family physician in their medical home, patients can be assured of care that is not only accessible but also accountable, comprehensive, integrated, patient-centered, safe, scientifically valid, and satisfying to both patients and their physicians.

24. Medical Home – Joint Principles 3/5/07: AAFP, AAP, ACP, AOA

25. Medical Home Common Elements
Care that is:
Accessible
Family-centered
Continuous
Comprehensive
Coordinated
Compassionate
Culturally effective
and for which the Primary Care Physician
shares responsibility

26. Chronic Care Model (ICIC)

27. Chronic Care Model. . .Collaborative Self-Management Support
Self-management support refers to the information, education, resources and care offered to people with chronic conditions to help them enhance their competence and confidence in managing their illness, making informed decisions about care, and engaging in healthy behaviors.
Collaborative self-management support refers to relationships that are built among all members of the health care team including the patient and her/his family.
Care practices include engaging the patient and family with an interdisciplinary team in Information Sharing, Goal Setting, Action Plans, Follow-Up Support.

28. Self Management Support

30. Brown University Family Care Center, Providence RI
Information Sharing.
Goal Setting.
Action Plans.
Follow-Up Support.

31. Collaboration
“Collaboration means that no one interest group is always right. It means taking what you think, and what I think, and what someone else thinks, and coming up with something that works for everyone.”
Bev McConnell Crider
From: Essential Allies: Families as Advisors
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32. Elements of Collaboration
Mutual respect for skills and knowledge.
Honest and clear communication.
Understanding and empathy.
Mutually agreed upon goals.
Shared planning and decision making.
Open and two-way sharing of information.
Accessibility and responsiveness.
Joint evaluation of progress.
Absence of labeling and blaming.
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33. Family/Professional Collaboration
At all Levels of Health Care
In the care for an individual patient.
In program planning and evaluation.
At the policy level.
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34. Barriers to Collaboration
Attitudes & perceptions about each other.
Past experiences.
Cultural differences.
Socioeconomic and educational influences.
Lack of skills.
Lack of logistical & administrative support.
Different purposes or agendas.
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35. Communication
Family-centered care is not just "being nice." It is a direct and intentional effort to unequivocally communicate to patients that they are viewed as distinct and valuable individuals with a family and place in the community.
The individuality of each patient and family is acknowledged.
Relationships between patients, families, and providers are essential alliances and partnerships with each bringing expertise to decision-making.
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36. Rules for Health Care in the 21st Century—The National Health Care Quality Report
Care is based on continuous healing relationships.
Care is customized according to patient needs and values.
The patient is the source of control.
Knowledge is shared and information flows freely.
Decision making is evidence-based. .
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37. Rules for Health Care in the 21st Century—The National Health Care Quality Report (cont’d)
Safety is a system property.
Transparency is necessary.
Needs are anticipated.
Waste is continuously decreased.
Cooperation among clinicians is a priority.
Crossing the the Quality Chasm: A New Health Care System for the 21st Century
Institute of Medicine, March 2001
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39. Patient Centeredness: A Definition
National Health Care Quality Report
Patient centeredness refers to health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they require to make decisions and participate in their own care.
Crossing the Quality Chasm: A New Health System for the 21st Century. Institute of Medicine, March 2001.
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40. Patient- and Family-Centered Care Rules to Live By
Attitude is everything.
Values determine outcomes.
All families have strengths.
Sensitivity does not mean psychoanalysis.
Case management is not the answer.
Patients and families are the experts on the experience of being service consumers.
The person with the most flexibility will be the catalytic element in the system.
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41. Patient- and Family-Centered Care Tricks of the Trade
Treat each person as an individual.
Respect patient and family knowledge about their own health needs.
Meet patients and families at their models of the world.
Negotiate your role and relationship (areas of responsibility).
Share knowledge and information.
Avoid psychological labeling.
Assist in problem solving.
Teach choice.
Honor natural supports.
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42. Patient- and Family-Centered Care Tricks of the Trade (cont’d)
Say “I don’t know,” when you don’t know.
Develop roles for patient and family consultants.
Consider functional issues in a gradual but systematic way.
Create alliances with other professionals at a personal level.
Make the primary care specialist relationship work.
Make sure that your staff knows about special needs.
Anticipate cross coverage.
Develop financial creativity.
Make talk time available.
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